Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi everyone, my family member has been on 800mg votrient for about 4months now. After 6 weeks scans showed significant reduction of pleural mets which were thrilled with! We are due next scans end of this month. My concern is that up to 4 days ago we had experienced ongoing side effects including a ...

Hi Olga
That's very interesting re response to various modalities - could you please tell me the name of the article so i can have a read? Did Ivan have SBRT and did he have a good response? Did he follow up with immunotherapy drugs? Many thanks!

Thanks for all the information Debbie! That's such fantastic news abiut your boy! It must be so traumatic seeing a young one go through this let alone an adult. Thank goodness we at least are fighting these terrible diseases in the early stages of the development of immunotherapy treatment . I reall...

Thanks a lot for that it's really helpful! How are you doing? Yes its almost 1 year since surgery, just need to keep getting clear scans for at least another 2 years for me to start relaxing a bit. I know when i last posted on here it was in the middle of all the treatments and i was on so many foru...

Thanks a lot Olga! Could you give me the name of the thoracic surgeon in UK please if that's okay. I have a contact in UK who may be able to speed up the referal process -fingers crossed! Is that not unusual to have a thoracic surgeon performing cryoablation instead of an interventional radiologist?...

Hi Olga thanks for your reply! I know Dr Littrup is the best and he would be our first choice but I'd read we would need a referral to see him from a US doctor and that this could be problematic? ? Also i thought he'd be the most expensive?? My partner is also a UK citizen and we are hoping that pos...

Hi all My partner was diagnosed with synovial sarcoma last year and at high risk of lung mets. We are in Australia but are willing to travel to UK if the need arises for lung cryoablation. Could anyone give us names / details of the best, most experienced Doctors / Interventional Radiologist in UK p...

Hi Debbie Thanks for your reply i very much appreciate it! My family member had synovial sarcoma - chest wall around top two ribs, it was 6cm in size. She's had all the conventional treatment - 4 rounds of Maid chaemo prior to surgery, radiation and surgery followed by 2 final rounds of chaemo. She ...

Hi! Just wondering if anyone knows of any Doctors that perform cryoablation for sarcoma lungs mets in Australia or nearby? Many thanks!